By Amy Schoenberger
Samantha's grandmother took her to the hospital one day when she noticed that her jaw was swollen. Through the two days of testing that Samantha endured, the swelling spread throughout her mouth, and she was in extreme pain.
Doctors could do nothing but sedate her.
Once diagnosed with Rhabdomyosarcoma in her jawbone at Schneider's Children's Hospital, Samantha's mother, Heather, had much on her hands. Samantha's brother Cameron, who is 7 years old, is autistic.
A social worker at Cameron's school first suggested to Heather Saff that she should get in touch with the Have A Heart Children's Cancer Society for financial and emotional support to get Heather and her family through this most difficult of times.
Based just east of East Meadow in Levittown, Have A Heart played an important role in Samantha and her family's experience with cancer, as well as her recovery. "Just last month, they gave us $500 to help cover medical bills," Heather said. "They have been amazing."
Have A Heart Children's Cancer Society was formed three years ago by Anthony Capriola, who now serves as the organization's president, to help families of children suffering from cancer.
The foundation was first created to aid underprivileged families who need help paying medical bills. The society, though, has since broadened its focus and now also works to help middle-class families from all over Long Island who are financially stressed owing to the high expenses associated with caring for a child who suffers from cancer.
According to the American Cancer Society, 9,100 children under 15 years old in the United States were diagnosed with cancer in 2002, and experts say this figure is constantly on the rise. Statistics also show that cancer is the leading cause of death among children under age 15.
Have A Heart tries to help the most-distressed families, raising money by setting up booths at children's expos and home shows. At the expos and shows, families with empathy toward charities come looking to donate money. The next children's expo will be held at Nassau Coliseum on Friday, Sept. 27.
Have A Heart connects with families through referrals from social workers and hospitals. The organization sets up a specific program for each child and family, and funds are distributed on a need basis.
Currently, Have A Heart is helping five families get through very difficult times. Nancy Turgen, director of Have A Heart, said she meets with the families and finds out what type of assistance each is seeking. The society organizes dinners and parties as fundraisers, and partners with other non-profit organizations, such as Toys of Hope.
Turgen said the group's purpose is to help the tragedy-stricken families and to ease the children's pain. "It's all about bringing up the quality of life for the child," she said.
Turgen also noted that the group is trying to get a Hyundai dealership to donate a car to Have A Heart Cancer Society for the Saffs.
During the course of Samantha's illness, Heather's car broke down, and the family needs a new vehicle. They now depend on extended family members to help them get around.
The Saffs have gone through many experiences over the past year and a half, since Samantha was diagnosed with cancer. They said doctors and organizations have been very helpful during all of it.
When Samantha underwent chemotherapy for her illness, Heather said the treatment was extremely trying. The chemo caused mixed emotions, and Samantha would be happy one minute, yet angry the next. The mood swings were unusual and devastating for a mother to see.
"It's like a roller coaster," Heather said. "You go up and down, and there's barely a median."
Despite all the hardships and stress that Samantha has gone through, she remains a friendly and energetic child with an extremely positive spirit.
"With Make a Wish, we went to Disney World," Samantha said enthusiastically. "The days went by so, so fast."
With Samantha's treatment now complete, doctors will carefully monitor her for the next five years. Since she had the disease as a child, she is susceptible to other types of cancer as an adult.
Rhabdomyosarcoma is a children's disease. If Samantha is diagnosed with the same disease before she is 18, doctors said there is a strong possibility she will not survive it again.
Have A Heart Children's Cancer Society is a non-profit organization. The office is at 2938 Hempstead Turnpike. To contribute to the group or recommend a family in need of assistance, contact Nancy Turgen at (516) 731-7910, or go to Have A Heart's Web site at www.haveaheartcharity.org.
